View Full Version : Hi, my name is Lori

07-13-2012, 12:59 PM
I have had lupus for about 4 years. I am married and have 2 boys 15, and 18. I am looking for people that know what I am going through. Theres no way of making myself look on the outside exactly what i am feeling in the inside. Even my rhuematologist came in the other day and said, you" look good". I know I will find people on this WHL site that understands what I am talking about

07-13-2012, 06:02 PM
Oh yeah. We've got two boys, 13 & almost 10 (less than 2 weeks). I can't hardly even play catch with them. I make it to work, and drag myself home everyday. Only 4 years to retirement... Ya try to keep a smile on your face and be cheerful about it, feel like $#!+ when you go in and everyone says "you're looking great!"... part of life - lol

Anyway, welcome to the forums. Check out the "stickies" in each section, browse around, ask questions, vent, say "Hey!" whenever. Great bunch of folks here, and great mods too (gotta butter 'em up too, ya know?)

07-13-2012, 07:27 PM
welcome whl i 3 children 25 boy 24 girl and 16 year old girl she is the one that finds it hard as i cannot do as much with her as i did i was told 5 years ago i had lupus it is hard onyou and your family we are here to support you hugs .

07-13-2012, 08:10 PM
I do not have any children but I can tell you I know you feel when it comes to the outside matching the inside. Sometimes I think it would be better if we did look as bad as we feel. Friends, family and doctors wouldn't question us at all!!!!! I am happy you found all of us and I know you will receive lots of wonderful information, new friends to laugh and cry with and just support from your fellow Lupies!!!!!

07-14-2012, 03:44 AM
hi lori and welcome.

i have had trouble explaining to people how i feel.
i am a male who used to work as a fitter in the mines in australia.
i now am that sore all the time i have had to retire on the disability pension.

one of the things that i find helpful is

07-14-2012, 05:55 PM
Hi and welcome to WHL! Yes, we understand exactly what you are talking about. There is even a website called "butyoudontlooksick.com" because this is such a big issue.

We are glad you found us and decided to join our WHL family. I look forward to getting to know you

07-14-2012, 11:00 PM
Hi Lori,
Welcome to WHL. I was lucky - my five kids were all raised by the time I started having symptoms of AI diseases. However, I feel your pain.
I have grandkids, and it's frustrating to not be able to do things with them. I have problems with balance and walking, so I'm frustrated that I can no longer carry a baby across a room - and I will be a Grandma for the fourth time this fall, but I hate the fact that I won't be able to carry her around or help with her very much.
I also had to give up a teaching job that I loved because my symptoms were keeping me from being the sort of teacher that my students needed me to be.
You will find lots of supportive people here, and you are always welcome when you need to vent.